Debate contribution: Respite Provision for Adults with Learning Difficulties, Complex Needs and Challenging Behaviour

Debate contribution by Ms Kellie Armstrong on 21 October 2024.

MLA

Ms Kellie Armstrong

Party at the time

Alliance Party

Date

21 October 2024

Type

Debate contribution

Business

Private Members' Business

Heading

Respite Provision for Adults with Learning Difficulties, Complex Needs and Challenging Behaviour

Assembly identifier

Official Report component 4604268

Read the official Assembly record

Text

I thank the Members who tabled the motion and the amendments. As my colleague said, we will support all of them. As many in the House know, I have been a carer. As part of the debate, I will spell out what it is like to be a carer. You look after someone. That someone could be a child or an adult. You get them up in the morning. You wash them. That means that you physically wash them, brush their teeth and shave them. You may have to change a nappy. You clean them after toileting. You get them dressed. Sweat is lashing off you. It is hard work. You might shower them. It is really hard. Once you have got them settled and fed, they may be sick, and you may have to change them again. You then have to entertain them. You have to give them medication. You have to feed them again at lunchtime, entertain them some more and take them to a hospital or GP appointment or to the optician's. They may need to go to the dentist. You then have dinner time, and it happens all over again. You get them ready for bed. You are up all night with the person, because you do not know whether they will get out of bed or choke. They may just not feel very well, or they may want to be entertained at 2.00 am or 3.00 am. So it goes on, every single day. No break; no anything. I always ask people, "What is respite for?" Is respite for the person — the adult or the child with a learning difficulty or complex needs — or for the carer? To be honest, it is for both. I could tell of times when a loved one whom I was caring for was sick of looking at me and everybody else in the house and wanted a break. At the same time, however, as a carer, you wanted a break from it. You needed to get your head showered for a while, because, if you did not, you could not keep going. Families often find that they are doing that every single day, but the carers are often completely and utterly forgotten. I remind everybody in the House that a carer does not get respite provision prescribed for them. It is prescribed for the person whom they care for. A carer could be at absolute breaking point but get nothing. I will give some examples. I had a constituent who was getting a hip replacement — a single person who was caring for their adult child, who was in their forties at that stage. The person needed a hip replacement and asked for help. They asked for respite care and were turned down. They felt guilty for the entire time that they were in hospital having a much-needed, much-waited-for hip replacement, because they did not know who was going to look after their one back at home. Some carers have told me that they have been offered day-centre care. That is wonderful, but, when transport lets them down, they have to drive the person to the day centre and wait outside for maybe three or four hours before bringing the person home again. That is not respite. That is not giving a carer a break. We need to review our care and respite system. They are two sides of the same coin. The person with the disabilities and the carer need to be taken into consideration equally. There are times when the person with the disabilities needs the break and times when the carer needs the break. The other thing that really annoys me — nobody will take this into account — is that the person with the disability is not always the one who needs to leave the house. Sometimes the carer needs to get out of the house, because what happens when the person with the disability leaves the house? We all know the answer: you tidy up, you clean and you change the beds. You do all that sort of work.

I will indeed.

Thank you, Mr Speaker. My colleague is exactly right. When you are a carer, you are on your own. It feels that way all the time. You are in second place. You are the person who does all the work, manages to keep the person healthy and well, and deals with all the emotional issues — could be frustration, could be anger, could be illness — but who looks after you? As Mrs Dillon said, when your respite is planned and you are really looking forward to it because you want to sleep for one day — you want to have one night's sleep — but it is pulled at the last minute, it is devastating. It is devastating, because you will not get it replaced any time soon. The all-party group on carers has said this time and again: carers should be included in planning for respite. Different carers and people with different learning disabilities should all be brought together, whether they are children or adults, to discuss what is best for them. The guilt that a carer feels about somebody having to go and get respite care is overpowering. I would love to see, in any plans going forward, that there is —.

Exactly, and that is why it frustrates me that respite always has to be somewhere else and cannot be in the person's home, where they have the lift, the hoist and all their facilities available to them. There needs to be a new plan — a new way of thinking — especially given the fact that we have an ageing population. Certainly, we are going to consider children and adults, but we have an ageing population, and the cliff edge comes when you have people with learning disabilities who need care, and who may have dementia or Alzheimer's. I remind everybody that —

— people with learning disabilities are not ill, but they have been removed from social services lists, so not all are listed.

1,020 words. Text as published by the Northern Ireland Assembly.

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